Patient-reported outcomes and where patient advocacy groups can help

As healthcare becomes more patient-centric and value-based – demanding a better understanding of patient needs – patient-reported outcomes (PROs) could be the route to uncover what matters most to these increasingly important stakeholders.

To Andrew Schorr, former chronic lymphocytic leukemia patient and founder of PatientPower.info, PROs are a crucial ingredient in ensuring the US healthcare system remains relevant in the future. Here, Schorr shares why PROs are significant, where they can fit into modern-day medicine and how patient advocacy groups can help make PROs a regular source of insights direct from the patients themselves.

Getting the full story

When seeing a doctor, most people tend to leave out details of how they really feel. Often the question “how have you been?” receives the almost automatic response of “I’m fine”.

However, it is likely that a lot of information that is of value to the doctor is being left out and much more has happened between doctor visits.

This is where PROs have a part to play, as they can help to reveal the whole story of a patient’s life, says Schorr. “They let providers know exactly how their care is affecting their patients.”

With this information, providers can evaluate whether the care they’re giving is consistent with the patient’s desired goals.

PROs don’t just unveil patient stories, though. They can also help with an often-overlooked aspect of care: caregiving.

“Conditions don’t just affect the patient; they affect everyone else within that person’s life too,” Schorr points out.

As people often leave out, or forget, important details about their well-being, caregivers can help fill in the gaps with their unique perspectives. At the same time, they themselves need the right support to continue doing what they’re doing. Using PROs to monitor caregivers’ health can dramatically improve patient care.

Improving medicines

As mentioned earlier, US healthcare is shifting toward a more value-based approach. This means that medicines regulators, like the Food and Drug Administration (FDA), are starting to measure the effectiveness of new therapies on what matters most to patients – not just on statistics related to survival or disease activity.

The best way of doing this is by understanding to what extent new medicines coincide with patients’ preferences.

Again, PROs offer the solution. As the patient is providing the information directly, PROs can distinguish specific patient needs which may relate more to aspects outside of traditional clinical measures, like number of side effects and quality of life.

This is particularly prominent for patients with little time to live, says Schorr. These patients are more likely to value a better quality of life with less pain than they would a pain-ridden extra few months.

“In the end, healthcare is supposed to make people live fuller, better lives – but not simply in terms of test results,” explains Schorr.

Where patient advocacy groups fit in

So how can patient advocacy groups help support the more widespread adoption of PROs? According to Schorr, they have a vital part to play.

“One of the biggest obstacles right now is culture – a lot of people go to their doctor expecting to be healed,” explains Schorr.

“Advocacy groups can play a crucial part in changing this culture and encouraging patients to have an active role in their health. They can set the standard and educate about how to be an active patient.”

The results of doing so are far-reaching, he adds, from improving shared decision-making dialogue to influencing policymakers.

But, to make the biggest impact, advocacy groups need to begin branching out to uncharted areas to influence patients who aren’t actively managing their own health currently. For example, reaching African-American communities by teaming with local churches.

“Patient advocacy groups already have a key role in improving patient care and, as such, can prove to be difference makers in PROs becoming part of mainstream healthcare,” he concludes.

Since 1984 Andrew Schorr, a medical journalist and former national television producer, has been a pioneer in educating patients about chronic conditions and cancer. He is a co-founder of HealthTalk.com and PatientPower.info. In 1996 he became a cancer patient himself, chronic lymphocytic leukemia, and was successfully treated in a phase II clinical trial. In 2011 he was diagnosed with a second blood cancer, myelofibrosis, and takes a daily, oral, cancer gene inhibitor to control the condition and lead a full life. Today Patient Power is one of the leading education and empowerment online channels for cancer patients and caregivers with its live and on-demand video programs seen more than 75,000 times each month. As a Medicare patient, Andrew grapples with the cost of today’s cancer medicine and is a grassroots patient-activist, most recently co-founding the “Precision Medicine for Me” (precision-medicine.me) initiative with a consortium of for-profit and non-profit organizations, initially focused on access to state-of-the-art care for US lung cancer patients. Andrew holds journalism degree from the University of North Carolina at Chapel Hill and Columbia University. He lives in Carlsbad, California and manages a Patient Power team in the US and Europe.